Day: March 18, 2011

Bravest boy in the world

We arrived to Sloan bright and early to start our plan for Ronan. Once again, you can never make a plan with all of this because as of now, our plan has changed. We headed back to Dr. Modak’s office and as soon as we walked in I looked at him and told him Ronan’s arm is worse and the pain is unbearable. I slowly pulled Ronan’s little arm out of his shirt to show Dr. Modak how swollen it looks now. He looked like he was going to be sick and was taken aback. This man is a doctor and to see the look on his face was upsetting to say the least. We talked with him and he decided we needed to hold off on the NK Cell trial and get Ronan’s pain under control. He sent us down for an X-ray as he was concerned Ronan may have a fracture due to how little he is using his arm. The X-ray came back and showed a lot of swelling, but no fracture. Dr. Modak told us what he felt like the best course of action was now which is to start radiating Ronan’s right shoulder today as well as admitting us to start him on his high dose chemotherapy. He said we could go home and do these things and Woody and I both said no way… we wanted to start ASAP. Dr. Modak made a few phone calls and now, we sit and wait to start Ronan’s radiation.

Woody looked at me in the waiting room with the tears welling up in his eyes. My turn to take over being strong for a while. I looked at him and I said, “What are you doing…. knock it off.” He just replied that he is upset because Ronan is in pain. I told him I was too, but that’s why we’re here now we’re not fucking around.  We’re not waiting until Monday, we’re not being put off, we are going to take care of this now so we can get back on track. We are in New York City for crying out loud and we are not wasting anymore time. I told you I feel strong in this city. Today I’m not sad. Today I am determined and strong. I know we are in the best place possible and Dr. Modak knows what is best. To say I love that man is an understatement; he is brilliant, smart, caring, and knows what is best for our son. Between him and Dr. Kushner; Ronan could not be in better hands. Knowing this gives me strength too.

After another grueling long day, we are finally settled in our room for the night. Today was a day full of dealing with a lot of Ronan’s emotions as he is beyond mad that we have to be at the hospital and not out romping the streets of NYC. We decided to check in until Sunday or Monday, so we could start Ronan’s high dose chemo tomorrow. Dr. Modak got us started on Ronan’s first session of radiation tonight. I cannot tell you how proud I am of my son. We went back to the room and Ronan was so upset and scared about the big table he was going to have to lay on. It took me 20 minutes with the 3 technicians ever so patiently waiting for me to get Ronan calmed down. He was so upset, and was crying and shaking. I sat and talked him through it, told him exactly what they were going to do, which was nothing scary at all… they were just going to take some pictures of him but everybody would have to leave the room, including me. He was not happy at all but after about 20 minutes, I got him to lay down into his little body mold that we had done earlier in the day. I looked at him in the eyes and told him how he could do this, without his sleepy medicine, and that I would be right back. He screamed for me as I left, but the techs strapped him down to protect him from falling and they came out of the room to start the radiation. I watched Ronan on 3 different cameras and I was able to talk to him the entire time on the speaker system. I watched as my baby held as still has he possibly could, his little lip quivering, being the bravest boy he could be. At one point I looked over at the Tech, tears streaming down my face, and told her this was beyond fucked up. Because it fucking was. It is probably one of the hardest things I’ve ever had to watch in my life. Not that the radiation was painful in any way…. because it is not. The whole scenario of watching Ro on a monitor, having radiation because the cancer is eating away at his little body was much too hard to handle. I did my best to continue to talk him though it and the whole thing took about 15 minutes; but if felt like a lifetime. Nobody could believe my little guy held so still, without anesthesia. Everybody was saying how amazing it was that a 3 and a half year old held so still, for so long. I could not have been more proud. After we returned to our room, Woody soon followed. He had missed the radiation part due to collecting our things at the Ronald McDonald House. He asked how it went and I quietly said fine, but soon ended up in his arms, crying like a baby. He held me tight for a few minutes and let me cry. Guess I’m not feeling as strong as I was earlier today. Sometimes my little badass attitude can even trick me into thinking I can handle this, no problem. I have decided I am only human and only can endure so much. Tonight in my husbands arms is just where I needed to be. We are so lucky to have each other.

Ronan will do 14 more days of radiation and start Ronan on a different high dose of chemo tomorrow as well which will be a 5 day treatment. Here we go again…. another little detour along the way to getting Ronan well. What else do you have for us world?? I’m trying my hardest, but this is getting beyond annoying. I just want my baby better already.

After talking to the Orthopedic doctors, they have found that Ronan has a Lytic Bone Lesion on his right shoulder. It basically means that the bone is becoming hollow. I am telling myself it sounds scarier than it is; which is true. It is something that can easily be fixed as Ronan is young and his bone will heal. It is going to take radiation to take care of the problem. Radiation is very effective in Neuroblastoma, so we have all the faith in the world. They want Ronan to be careful with his arm, so he does not end up with a fracture and say the radiation should make the pain disappear in a few days. Crossing all my fingers and toes. I cannot stand seeing him this way.

This is all the update I can do tonight as I am beyond tired, but wanted to take the time to let you all know what was going on. Please continue to send our little guy all your love and prayers. He needs them so badly. Sweet dreams, friends.

xoxo

I would like to say a big FUCK YOU CANCER for doing this to my beautiful baby boy. I hate you very, very, much.

Hello New York. We’ve missed you….

I don’t have days where I don’t feel like writing very often. If I miss a few days here and there, it’s usually because I am too busy, too tired, or just taking a little break. Today is honestly the first day where I don’t feel like writing; yet as I sit on this airplane while Ronan sleeps, I have too many thoughts filling my head and my mind refuses to be quiet. So, I’ll share. Today, is the first time that I feel like it may be too much but I started this blog and one of the promises I made to myself was to always be honest, no matter how painful it might be. Today stings. Today was a blur. Today does not seem real.

My morning started off with Ronan crying about his arm because he is in so much pain. He was actually up off and on all night and his pain medicine seemed to only help just a little. That led me to sending Dr. Maze a text telling him what was going on and asking him if he thought it was a good idea to call Dr. Eshun this morning to ask if we could bring Ro by the clinic to give him a dose of morphine before we got on the plane. He responded with a yes. I called the clinic, but it was too early and nobody was there yet so I was told to call back at 8:00 a.m. A few minutes later, Dr. Maze responded that he had called one of Ronan’s main nurses, “A” and that she would be calling me soon. He didn’t have to do that for me, but he did because he loves Ro and that is just the type of person he is. One who goes above and beyond. I was beyond a mess but was trying so hard to hold it together and waiting for the clinic to open up so I could speak to someone was more than I could handle. “A” called me about 15 minutes later and I had a lengthy conversation with her. We talked about what was going on, what she could do for me, and how we could go about getting it done to work with us leaving on a flight at 3. She wrote out a new, stronger pain medicine prescription for Ronan and my dear sweet friend, Melissa, drove down to PCH to pick it up for me, got it filled at the pharmacy and dropped it off to my house. “A” also decided that I should bring Ronan down to the clinic at noon so they could give him a dose of morphine to make him a little more comfortable for the flight. This all sounded like a good plan to me and it was one of the reasons I made it through today. Knowing Ronan is in so much pain is intolerable and if I have to numb him until we start this chemo, bring it on. I can’t stand seeing him hurt the way he is.

Tricia stopped by on her way to work for a very quick goodbye. As soon as she walked in the door, we embraced and both started bawling. We held each other for a few minutes and she gave me her best New York pep talk, but it didn’t really work. I felt as both of our hearts were smashed on the floor below us in a million pieces. Our goodbye was fast as that is the only way we could both handle it; anymore time spent together would have been too much for us and way too disastrous.

After Trish left, I was scrambling to get last minute things done. Fernanda came over to help me and cooked up a huge breakfast for the boys. I was in such a daze and she could tell as she kept trying to tell me things and I couldn’t hold a thought for a second. I tore through the last of the mail, finished packing our things, and made a few phone calls. Fernanda scattered around, cleaned up the kitchen, and helped keep Liam, Quinn, and Ronan occupied. Bethany stopped by next and brought her little Madden with her along with her to play with Ronan. She came with her arms full of groceries for me as I told her this morning, my fridge was empty and my poor boys were living off of the junk in the cupboards. I told her I needed fruit, veggies, meat and all things healthy or else I was going to lose my mind. She couldn’t have been happier to help and I am so thankful. Ronan was so excited to play with Madden and we all sat and watched the 4 boys run around, chasing each other with Nerf Guns and laughing away. I watched the look in both Bethany and Fernanda’s eyes today as we watched Ronan trying his best to keep up, all while keeping his right arm down at his side as he was trying not to use it. The look in their eyes alone was enough to kill someone. I tried my best to keep them both busy with tasks as well as myself because I knew if I didn’t we were all going to crumble to the floor and end up in a wet pile of tears. My dear Niki stopped by with her two little ones in the middle of all the chaos to say goodbye. Stacy stopped by as well. Soon I had a house full of friends, kids, and it was so beautiful…. for being so ugly. I kept thinking to myself, my house should not be full of kids running about, laughing, and my dear friends because Ronan has cancer and we are leaving for New York. It should have been because it was a gorgeous Spring Break day and nothing more. Fucking cancer.

Everyone left except Fernanda who held the fort down as I hopped in the shower and got ready to go. Danielle came over right as we were walking out the door to leave. I was so glad I as able to give her a hug and say goodbye. Mimi and Papa came over to stay with Liam and Quinn and Fernanda took Ronan and myself to the clinic to get his morphine. I knew once I got there it was game over. I took one look at “A” and the tears started and wouldn’t stop. Dr. Adams came over as well to say goodbye and gave me a couple big hugs and said some sweet words. Sharon also came over and held Ronan and told him she loved him. She hugged me to and told me everything was going to be alright and she loved me too. I left there still crying, holding on to Ronan’s hand as he looked up at me and told me he was sad too. I know he is sad and it is not just because I am… he knows what is going on and what is killing him the most is the same thing that is hurting the most for me; leaving his brothers behind. He has been crying on and off about it all day long and has been saying, “But, I’m never going to see my brothers.” He says these words over and over and it cuts like a knife. I just put on my bravest face, lie to him, and tell him of course he will, they will be coming to New York in a few days. Not true at all, but I think Ronan is young enough he is not sure how much time passes between seeing Liam and Quinn. He doesn’t fully understand the concept of a few days or a few months as it all seems the same to him. I hope anyway.

We finished up earlier than expected at the clinic so we ran over to American’s Taco Shop for some lunch. Fernanda hadn’t been there before and as little of a thing as it was, I felt good giving her something like taking her to my favorite spot to eat Mexican food. Now she can share it with her family and knowing that I introduced it to her, felt so good to me. So little and silly, but little and silly makes such a difference in my life now. We hurried and ate our food and headed to the airport. Woody met us there with Mimi, Papa, Liam and Quinn. Liam seemed alright with us going, it was Quinn who I watched be worried. He gave me his biggest, nervous smile and hugged and kissed me. The worst part was watching Ronan grab on to Quinn’s thigh and kiss it goodbye as it was the last thing he was clinging to. I turned around just in time to see there last embrace before we headed off to the plane. We checked our bags and got to the gate quickly and here we sit. Ronan is sitting in the middle of us and is sleeping soundly. So soundly that I was able to take one of his Oxycodone, break it in half, and slip it into his mouth. Ah, the joys of being able to medicate your child so he can’t feel his pain and it is a victory that he didn’t wake up to fight me on taking it. These are the things that I get to be thankful for now.

Woody. My Woody. My Woody who is so worried about Ronan’s arm that he was feeling it on the plane and is convinced that he can feel the cancer in it. My Woody who looked at me and told me he felt like dying. He then said to me, “Why don’t you?” My reply was, “I do.” I watched him push the tears away and then he grabbed my hand. We stayed that way for a while and he then too fell asleep. I just sat, stared at both of them, and cried. Today has been way too much for me. Sometime I am amazed at all of the tears I am able to cry as they seem to never end. I wonder if someday, I will have cried so many tears that my body will dry up like a cactus and there will be no more. I wonder these stupid things in my head all of the time because I now believe anything is possible because of what we are going through. The thing that I had never giving a second thought about because I thought it was impossible and we as a family, were invincible. Things like this don’t happen to good people like us, right.??? Wrong. So very, very, wrong.

Time to get this New York thing going. Time to get Ronan on the path he was meant to go on. Time to make the very best of New York and all that it has to offer. Time for this city to heal my heart again as it has done it before and it can do it again. Time to get him well so we can be one step closer to being back home for good where we belong. I know we can do this…. he can do this; he will beat this. I have no doubt that New York is the answer we have been looking for. I’ve always wanted to live here… so I will take this and make this as positive as an experience as possible. I’m tired of fighting this new life; I have no choice but to embrace it as much as possible. I will take all the sadness and find the happiness in it; even if that means finding happiness is in a run in Central Park or seeing my twins’ faces on Skype. I’m not going to let this break me, ruin me, ruin my family. I may keep getting pushed down, knees scraped and bloody…. but I will never stop getting back up no matter how bloody and bruised I get.

Thank you to all of my family and friends who have helped out so much. You all have no idea how much you mean to us. My words could never be enough to tell you how thankful we are. I feel like we have a little army of ants, whom just keep working away, never stopping, until they see us through to the end of this storm. When Ronan is cured of this awful disease, I hope you know that you will all be a part of the reason that he survived. Your love and support keeps me from digging a hole somewhere and never coming out; right Trish?? I love you all to the moon and back. Kisses from New York to all of you…. we will never forget how blessed we are to have the people surrounding us that do. Only the best of the best, and the truest of the true.

xoxo